Thanks for the kind emails, comments, and calls of concern this week...I HAVE been under the weather and now IN it! It seems there are more of you out there who read this page of blathering than I realized and I DO appreciate your concerns!
Gastro situation seems a bit improved...at least I haven't had fire hose diarrhea for 12 hours now and my "Burny Butt" syndrome is lessening. TMI??? Just thought you should know...
I decided to go against medical advice yesterday and STOP the GI meds as they were not helping me and only seemed to make my situation worse. I have a bottle of Prednisone at home (left over from another period of "non-compliance") and started taking that at a low dose...I believe I may have yet another undetected autoimmune disorder, this time in my bowel, so it seems logical to me to try the steroid since nothing else was helping. I sent my neurologist an email telling her of my plan...she told me NOT to do it because, "You don't know what you're treating". I replied with my best logical answer, "And neither do you!" Did it anyway...so far, she hasn't fired me as a patient, but said patient pink slip could be in hand!
Long story longer...my ARNP consulted with a GI specialist right before she WENT ON VACATION on Wednesday (what's up with my practitioners skipping town when I'm in crisis...this appears to be a pattern!)...we tried the anti-diarrheal meds...they didn't work...she left another ARNP on call for her (who has no IDEA who I am) who politely told me to "push fluids" yesterday morning...this sent me over my precariously narcotic, drug-induced edge...I decided I would need to take matters into my own hands, which I did. My labs on Tuesday were all within normal range (stool sample results not back yet as I assume the technician "handling" the product was rushed to a local ER after opening the package and never completed the test), except my good ol' potassium was dropping AGAIN...it seems I couldn't hang onto a bit of potassium if my life depended on it (and it DOES depend on it occasionally!)...I've had no appetite, mild nausea (except for dry heaves on Wednesday), malaise, weight loss (a positive side effect), and DIARRHEA that would give Niagra Falls a run for it's money (pun intended)...thus my steroid/Prednisone decision...NOTHING ELSE WAS/IS WORKING so why not try something that's sure to boost my appetite and give me a bit of energy?
I did it...I feel better today...can't say I'm exactly hungry, but food is not repulsing me. I suppose if this is a virus, today "could" have been a turning point anyway with or without the steroids...whatever...the point is, I FEEL a bit better and I'm going to continue to "play doctor" on myself (not nearly as fun as what I remember with the neighborhood kids at age 10) until I can get IN to see a GI specialist and resolve this gut stuff once and for all...or at least have a diagnostical reason to complain!
If there is a somewhat rusty star (note picture) hanging in my sky these days, it is being informed Tysabri has now been released, my neuro's clinic should be certified on Tuesday of next week, and after taking down a tree of paperwork, I "should" be starting the drug in the next month. I don't know if this is a good thing or not since it could kill me, but....whatever! At least it is a hopeful change as my current functioning/level of disability is tapping on my nerves (isn't that a great MS line?) and maybe the Tysabri will slow this progression.
Today it's supposed to hit somewhere between 90 and 95 degrees in Seattle. For those of you already sweltering in 100 plus temps, I apologize for whining. But WE HAVE NO AIR CONDITIONING HERE!!!
So...if I don't die of heat exhaustion and bloat up like road kill, I'm hoping my gut may be on the mend and I will be able to return to work this weekend. And, of course, entertaining you via blog!
Wish me luck...